Muscular disease refers to a number of diseases that genetically degenerate and progressively weaken skeletal muscles. All the various types of muscle disease grow worse as time progresses with progressive degeneration and weakening of muscles. Muscle disease cannot be caused by injury or activity (National Institute of Neurological Disorders and Stroke, 2024)
What is it?
Muscle disease weakens the muscles over time at cellular level. Normally muscles contract when signals travel from the brain through the spinal cord and nerves triggering the muscle fibers. The protective structure "dystrophin-glysoprotein" complex helps prevent damage when these fibers contract. In muscle disease, defects in this structure lead to muscle breakdown. Muscle fibers detoriate and are replaced by fat and connective tissue.
Causes
Symptoms experienced by individuals with RYR1-related diseases can be highly variable. It generally causes weakness, difficulty in moving, and even heart and breathing complications. Disease course is often non-progressive or very slowly progressive. Lifespan is generally normal in affected individuals and cognitive development is unaffected.
Symptons
There is no cure but people with muscular diseases should be monitored by a care team consisting of a neurologist with expertise in neuromuscular disease. Treatment options include medications, physical and occupational therapy, and surgical and other procedures. (Mayo Clinic, 2022)
Treatment
To get a good understanding of the participants cause of her struggles there was needed some research on the muscle disease she has namely congenital myopathie. By understanding this topic later on interview questions can be made. Muscular disease refers to a number of diseases that genetically degenerate and progressively weaken skeletal muscles. All the various types of muscle disease grow worse as time progresses with progressive degeneration and weakening of muscles. Muscle disease cannot be caused by injury or activity (National Institute of Neurological Disorders and Stroke, 2024)
Congenital Myopathy
Research Question
What are the struggles of a user with a congenital myopathy muscle disease in their day-to-day tasks and how could they be solved using assistive technology?
Research purpose
The goal of the research is to identify the struggles within the participant’s day-to-day tasks such as the mobility limitations and their unmet needs with the aim of developing a product that will improve the quality of their life overall.
Search Relevant Sources
During the interview Linda mentioned she was not able to go to the top floor of her house, because the stairs are too steep. So this is now the "man cave" for her husband
Linda likes to travel. She has
plans to go to Japan one day.
She also likes knitting and being
creative with fabric
Linda has low energy levels which makes her feel tired more easily
"My cane is like a fashion accessory. If I need to use one it might as well be a fun one"
The requirements that the solution needs to have.
The solution to Linda's problem (not being able to stand up from the ground independently) is represented by a question mark
Linda wakes up at nine and starts her work at 10 in the morning. She works from home.. But once in a week she travels to Deventer to work at Saxion
Click on the green dots to learn more
(click again to let the text dissapear)
To gain more information regarding the participant, an interview was conducted with the goal of gaining information on the daily life and struggles of the participant. In preparation for this, a sheet with information, regarding the project and what will be done with the answers was created and given to the participant so that they knew what they were agreeing to. The informed consent form was also made to fit the project and what the team wanted to do (like record the interview).
To make sure the interview would go smoothly, different subjects were formed and accordingly different questions were made to find the information on the subjects so the challenge could be found.
The interview was held at a café “Wattez” which proved to be a very comfortable spot for a first meeting and the interview went well
Interview
In order to stay mobile Linda swims every week. She also likes to play "Ring Fit" which is an active sport game on the Switch
Research question
What are the struggles of a user with a congenital myopathy muscle disease in their day-to-day tasks and how could they be solved using assistive technology?
Research purpose
The goal of the research is to identify the struggles within the participant’s day-to-day tasks such as the mobility limitations and their unmet needs with the aim of developing a product that will improve the quality of their life overall.
Search Relevant Sources
What is it?
Muscular disease refers to a number of diseases that genetically slowly degenerate and progressively weaken skeletal muscles. All the various types of muscle disease grow worse as time progresses with progressive degeneration and weakening of muscles. Muscle disease cannot be caused by injury or activity (National Institute of Neurological Disorders and Stroke, 2024)
Causes
Muscle disease weakens the muscles over time at cellular level. Normally muscles contract when signals travel from the brain through the spinal cord and nerves triggering the muscle fibers. The protective structure "dystrophin-glysoprotein" complex helps prevent damage when these fibers contract. In muscle disease, defects in this structure lead to muscle breakdown. Muscle fibers detoriate and are replaced by fat and connective tissue.
Symptoms
Symptoms experienced by individuals with RYR1-related diseases can be highly variable. It generally causes weakness, difficulty in moving, and even heart and breathing complications. Disease course is often non-progressive or very slowly progressive. Lifespan is generally normal in affected individuals and cognitive development is unaffected.
Treatment
There is no cure but people with muscular diseases should be monitored by a care team consisting of a neurologist with expertise in neuromuscular disease. Treatment options include medications, physical and occupational therapy, and surgical and other procedures. (Mayo Clinic, 2022)
Congenital Myopathy
To get a better understanding of our participant's challenges, preliminary research on her muscle disease, congenital myopathy, was essential. This knowledge will inform the development of interview questions later on.
Muscular disease refers to a number of diseases that genetically degenerate and progressively weaken skeletal muscles. All the various types of muscle disease grow worse as time progresses with progressive degeneration and weakening of muscles. Muscle disease cannot be caused by injury or activity (National Institute of Neurological Disorders and Stroke, 2024)
Hover over the green dots
To gain more information regarding the participant, an interview was conducted with the goal of gaining information on the daily life and struggles of the participant. In preparation for this, a sheet with information, regarding the project and what will be done with the answers was created and given to the participant so that they knew what they were agreeing to. The informed consent form was also made to fit the project and what we wanted to do (like record the interview).
To make sure the interview would go smoothly, different subjects were formed and accordingly different questions were made to find the information on the subjects so the challenge could be found.
The interview was held at a café “Wattez” which proved to be a very comfortable spot for a first meeting and the interview went well
Interview
The requirements that the solution needs to have.
Linda wakes up at nine and starts her work at 10 in the morning. She works from home.. But once in a week she travels to Deventer to work at Saxion
During the interview Linda mentioned she was not able to go to the top floor of her house, because the stairs are too steep. So this is now the "man cave" for her husband
In order to stay mobile Linda swims every week. She also likes to play "Ring Fit" which is an active sport game on the Switch
The solution to Linda's problem (not being able to stand up from the ground independently) is represented by a question mark
Linda likes to travel. She has
plans to go to Japan one day.
She also likes knitting and being
creative with fabric
Linda has low energy levels which makes her feel tired more easily
"My cane is like a fashion accessory. If I need to use one it might as well be a fun one"
Identifying and Choosing Problems
After the interview three main problems were defined and sketched:
-
Getting up from the ground is a difficult task
-
Getting the laundry basket up the stairs
-
Getting tired while performing long tasks and house chores
The problem that was chosen to develop a product is, getting up from the ground. This is because for the long chores problem Linda already has made solutions by having multiple chairs around. Furthermore, compared to doing the laundry, getting up from the ground has a bigger impact on her daily life and solving this problem gives her a lot more autonomy.
Losing autonomy is one of the main concerns that Linda has for her future.
Identifying and choosing problems
Based on the interview there was made a Persona of Linda, our participant.
Persona
LINDA
.jpg)
42 YEARS OLD
ENJOYS DOING CRAFTS WITH FABRIC AND TRAVELING
BORN WITH MUSCLE DISEASE - CONGENITAL MYOPATHY
WORKS AT SAXION
LIVES IN THE CENTER OF ENSCHEDE
HER GOAL IS HAVING MORE INDEPENDENCY
NEEDS TO STAY MOBILE
*our participant Linda has given us full consent to use her name*
WORKS AT SAXION
Based on the interview there was made a Persona of Linda, the participant.
(Click on the character to get to know Linda)
LINDA
Persona
42 YEARS OLD
BORN WITH MUSCLE DISEASE - CONGENITAL MYOPATHY
NEEDS TO STAY MOBILE
LIVES IN THE CENTER OF ENSCHEDE
ENJOYS DOING CRAFTS WITH FABRIC AND TRAVELING
HER GOAL IS HAVING MORE INDEPENDENCY
Assistive Technologies
People with congenital myopathy often have to rely on different kinds of assistive technology to go through their daily tasks. The current technology which is being used include devices from mobility aids which reduce strain to wearables which provide support. Developments in medical/technological fields keep improving the solutions for this muscle disease, with potential AI assistive technologies being used in the near future. With continuous improvements that keep happening, the assistive devices of the future will provide more opportunities for people with muscle diseases, improving their independence and overall quality of life.
Current
-
Wearables: Exoskeletons and orthoses support mobility
-
Mobility Aids: Wheelchairs and scooters reduce fatigue
-
Respiratory Support: CPAP/BiPAP for breathing assistance
-
Feeding Aids: Feeding tubes for severe bulbar involvement
Future
-
Advanced Exoskeletons: More precise movement control
-
Gene Therapy: Enhancing muscle function
-
AI Devices: Personalized assistive solutions
-
VR/AR: Immersive therapy for rehabilitation
List of Requirements
Based on the previous research and the interviews a List Of Requirements was constructed in 4 parts:
1. Project requirements
2. Functional requirements
3. User requirements
4. Aesthetic requirements
This LoR was made to further define the demands our product should adhere to:
Nr | Requirement | Test method | Justification |
|---|---|---|---|
1.1. | There shall be a physical prototype that is a 1:1 representation of the final product. | Visual inspection | Project requirement |
1.2. | The product shall help the participant maintain a healthy lifestyle. | User feedback | Project requirement |
1.3. | The product shall take the participants' needs and wishes into account. | User feedback | Project requirement |
2.1. | If it is meant to be lifted, the product shall weigh no more than 7 kilograms | Weighing using a scale | During the interview the participant said that the maximum to lift was 8 to 9 kilograms. |
2.2. | The product shall be sturdy enough to hold at least 100 kgs when used correctly. | Putting a weight on the product | In order for the participant to be able to sit on, or hold on to the product, it shall need to hold that weight. source for weight? |
2.3. | If the product uses power to operate, it shall use batteries and not a cord. | Functional testing with batteries | The participant prefers to take the product around the house which would be made harder when the product has to be attached to a power plug. |
2.4. | The product shall not need a connection to Wi-Fi or other external sources to work. | Test the product in offline mode | The participant does not want the product to connect to external sources. |
3.1. | The product shall be portable. | User testing | To be able to use the product around the house, the participant has to be able to move it around. |
3.2. | The product shall assist the user in getting up from the ground | User testing | From the interview the biggest challenge that came forth from the participants' daily life was getting up from the ground, therefore this is the problem that the product should solve. |
3.3. | The product shall be easy to clean and maintain | User testing | Cleaning should not add an extra difficulty to the participants daily routine |
4.1. | The product shall blend into the house of the participant. | Creating a style collage and seeing if the design fits in. | The participant has mentioned during the interview to prefer a product that blends into her house, so she feels the most normal while using it. |
4.2. | The product shall not be neon orange. | Visual inspection | The participant has expressed a distaste to the colour as the only colour that should not be used. |
-
Advanced Exoskeletons: More precise movement control
-
Gene Therapy: Enhancing muscle function
-
AI Devices: Personalized assistive solutions
-
VR/AR: Immersive therapy for rehabilitation
Developments in medical/technological fields keep improving the solutions for this muscle disease, with potential AI assistive technologies being used in the near future. With continuous improvements that keep happening the assistive devices of the future will provide more opportunities for people with muscle diseases, imrpoving their independence and overall quality of life,
Future
Assistive Technologies
Nr | Requirement | Test method | Justification |
|---|---|---|---|
1.1. | There shall be a physical prototype that is a 1:1 representation of the final product. | Visual inspection | Project requirement |
1.2. | The product shall help the participant maintain a healthy lifestyle. | User feedback | Project requirement |
1.3. | The product shall take the participants' needs and wishes into account. | User feedback | Project requirement |
2.1. | If it is meant to be lifted, the product shall weigh no more than 7 kilograms | Weighing using a scale | During the interview the participant said that the maximum to lift was 8 to 9 kilograms. |
2.2. | The product shall be sturdy enough to hold at least 100 kgs when used correctly. | Putting a weight on the product | In order for the participant to be able to sit on, or hold on to the product, it shall need to hold that weight. source for weight? |
2.3. | If the product uses power to operate, it shall use batteries and not a cord. | Functional testing with batteries | The participant prefers to take the product around the house which would be made harder when the product has to be attached to a power plug. |
2.4. | The product shall not need a connection to Wi-Fi or other external sources to work. | Test the product in offline mode | The participant does not want the product to connect to external sources. |
3.1. | The product shall be portable. | User testing | To be able to use the product around the house, the participant has to be able to move it around. |
3.2. | The product shall assist the user in getting up from the ground | User testing | From the interview the biggest challenge that came forth from the participants' daily life was getting up from the ground, therefore this is the problem that the product should solve. |
3.3. | The product shall be easy to clean and maintain | User testing | Cleaning should not add an extra difficulty to the participants daily routine |
4.1. | The product shall blend into the house of the participant. | Creating a style collage and seeing if the design fits in. | The participant has mentioned during the interview to prefer a product that blends into her house, so she feels the most normal while using it. |
4.2. | The product shall not be neon orange. | Visual inspection | The participant has expressed a distaste to the colour as the only colour that should not be used. |
Based on the previous research and the interviews a List Of Requirements was constructed in 4 parts:
1. Project requirements
2. Functional requirements
3. User requirements
4. aesthetic requirements
This LoR was made to further define the demands the product should adhere to:
(Scroll to the right to see the justification):
List of Requirements
-
Wearables: Exoskeletons and orthoses support mobility
-
Mobility Aids: Wheelchairs and scooters reduce fatigue
-
Respiratory Support: CPAP/BiPAP for breathing assistance
-
Feeding Aids: Feeding tubes for severe bulbar involvement
People with congenital myopathy often have to rely on different kinds of assistive technology to go through their daily tasks. The current technology which is being used include devices from mobility aids which reduce strain to wearables which provide support.
Current
Assistive Technologies
-
Wearables: Exoskeletons and orthoses support mobility
-
Mobility Aids: Wheelchairs and scooters reduce fatigue
-
Respiratory Support: CPAP/BiPAP for breathing assistance
-
Feeding Aids: Feeding tubes for severe bulbar involvement
People with congenital myopathy often have to rely on different kinds of assistive technology to go through their daily tasks. The current technology which is being used include devices from mobility aids which reduce strain to wearables which provide support.
Current
-
Advanced Exoskeletons: More precise movement control
-
Gene Therapy: Enhancing muscle function
-
AI Devices: Personalized assistive solutions
-
VR/AR: Immersive therapy for rehabilitation
Developments in medical/technological fields keep improving the solutions for this muscle disease, with potential AI assistive technologies being used in the near future. With continuous improvements that keep happening the assistive devices of the future will provide more opportunities for people with muscle diseases, imrpoving their independence and overall quality of life,
Future